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ME/CFS, POTS (postural orthostatic tachycardia syndrome), joint hypermobility, teenagers and anxiety

May 13, 2016 by info@breathingremedies.co.uk Leave a Comment

Not the most catchy title I admit but read on if you have ME/CFS, or a teenager with it, or unexplained anxiety.

If there is one thing worse than having ME/CFS, it is watching your child go through it; their life and education on hold, unable to leave the house, with little support or understanding. If I had found this information earlier, I may have been able to help my son more, I hope it helps you.

ME/CFS and POTS

The IOM’s (Institute of Medicine) new definition of ME/CFS or SEID (systemic exertion intolerance disease)

    • A substantial reduction in activitybluebells
      • More specifically: A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest
    • Post exertional malaise
    • Unrefreshing sleep
    • Either cognitive impairment or orthostatic intolerance

POTS or postural orthostatic tachycardia syndrome has a lot of symptom overlap with ME/CFS and may be one cause of it. Sufferers cannot tolerate moving from a lying position to an upright position – that is the orthostatic part – as it causes an abnormally large increase in heart rate, called tachycardia and brings on symptoms.  Symptoms include “headaches, fatigue, palpitations, sweating, nausea, fainting and dizziness”. They often feel short of breath.

In POTS, blood pooling can occur in the extremities, and feet can appear mottled and purplish in colour due poor circulation as blood vessels being too weak and “stretchy”;  heartrate increases to try to compensate and improve circulation, as not enough blood and oxygen is getting to the brain.

“ PoTS may be under diagnosed in those with chronic fatigue syndrome (CFS) and is estimated to affect around 25-50% of people with CFS. It has been suggested that these two conditions may be part of the same group of conditions with similar causes”.

Dr Phil Fischer of the Mayo clinic summarises POTS in this useful 5 min video. He mentions mono or mononucleosis. We call it glandular fever in the UK and it is caused by the Epstein-Barr Virus (EBV). POTS has only quite recently been studied and recognised in teenagers.
POTS could be causing a lot of the chronic fatigue in teenagers, and it is treatable.  (Also common in 30-50 age group in women).

Causes of POTS 

Taken from POTSUK, a great website resource.

PRIMARY PoTS

  • Abrupt onset may follow infection, pregnancy, surgery, immunisation or trauma. May be auto-immunity.
  • Developmental  PoTS affects teenagers (gradual onset around age 14 with symptoms peaking age 16) and 80% resolve within a few years.
  • Hyperadrenergic PoTS – (genetic defect)

SECONDARY PoTS

  • Deconditioning (e.g. after prolonged bed rest following illness)
  • Joint Hypermobility Syndrome an inherited multi-system connective tissue disorder.
  • Other medical conditions – diabetes, amyloidosis, sarcoidosis, SLE  (Lupus)
  • Poisons – alcohol, heavy metals
  • Cancer or chemotherapy

Joint hypermobility and POTS

Interestingly joint hypermobility can cause secondary POTS. About 20% of the population have joint hypermobility, many have no symptoms but others suffer from POTS and extreme exhaustion, as well as joint dislocations and digestive problems and a range of other symptoms. They have a defect in collagen in connective tissue causing lax ligaments and weak blood vessels that allow pooling of blood in the legs. This pooling may lead to exaggerated cardiovascular responses to maintain the output of blood from the heart.

Joint hypermobility and anxiety

“When the heart has to work extra hard just to circulate blood, it brings the entire body to the verge of a fight-or-flight reaction, with increased pulse and hyperventilation, requiring very little to set off panic”.

Moreover, individuals with joint hypermobility had a bigger amygdala, a part of the brain that is essential to processing emotion, especially fear. So joint hypermobility is linked with anxiety and this may be an interesting example of a purely physical disorder being the cause of mental health problems.

So heart rate increases, activating the sympathetic fight or flight rather than the parasympathetic rest and digest branch of the autonomic nervous system, so dysautonomia.

Breathing retraining for hyperventilation (Buteyko) is likely to help in these cases, it is excellent for rebalancing an imbalanced autonomic (involuntary nervous system) and quickly relieving anxiety.

The POTS control methods below may also be of use.

Non-medication control of POTS

There are many things to try from compression stocking to reduce blood pooling in the legs, to increasing blood volume by increasing consumpion of salt (preferably unprocessed sea salt rather than table salt) and water, taking care to regulate body temperature, being careful to get up slowly, sit down if you feel dizzy, and many other tips and tricks, very well described here; look in the “living with POTS section”. One of them is exercise, see below.

Exercise for POTS

Deconditioning due to exhaustion and feeling ill after exercising can make the situation worse, and exercise is indicated for POTS sufferers, but initially only in a horizontal position as in some Pilates exercises, or on a recumbent bike for example, slowly building up to using an upright bike and other exercise.

Exercises to strengthen leg muscles to help pump blood and stop pooling in the legs would also be useful.

Here is a great exercise that could do just that, does not need special equipment, and it can be done lying down, (the second one in, foot circles and point flexes); pay careful attention to the instruction and alignment, and see if you can gradually work up to doing 40 of each.

Medications for POTS

If non-pharmacological approaches don’t work, medications are available. Drugs that slow down heart rate such as Beta blockers tend to be effective for many. More information on medications can be found here.

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Filed Under: fight or flight, ME/CFS, sympathetic nervous system, threat response Tagged With: hyperventilation, ME/CFS, orthostatic intolerance, poor circulation, threat

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About me, Buteyko breathing educator

Janet Winter breathing and posture educator (Buteyko and Egoscue)

Dr Janet Winter (PhD)

Hello, I am Janet,  a  Breathing educator (Buteyko), and Posture specialist (Egoscue).

I help people recover from asthma, allergies, sinusitis, anxiety, sleep problems, headaches, IBS chronic fatigue (ME/CFS) and more, by improving their dysfunctional breathing.

Listen to a client’s (Suzy Glaskie, functional medicine health coach at Peppermint Wellness) 15 minute podcast on how Buteyko helped her.

I teach natural health control with no drugs, gadgets or manipulation. You can sign up to my newsletter here.

Phone me 01663 743055 (Dr Janet Winter) or contact me here.

What I do

Breathing education gently retrains a disordered breathing pattern and helps people naturally recover from breathing-related health problems.

The Buteyko Method relieves asthma symptoms, and has been listed in the UK Asthma Guideline since 2008.
I am a member of the Buteyko Breathing Educators Association and am fully insured.

I am also a qualified postural alignment specialist (PAS) Egoscue method. Good posture is essential for good breathing and proper function in general.

My background

I was involved in healthcare/biomedical research for 30 years although previously in a very different role: before training as a Breathing educator, I spent 20 years in drug discovery looking for new painkillers for a major pharmaceutical company based in a London Institute.
I worked as a neuroscientist and cell biologist, directing a team of bench scientists. (So I am not a medical doctor but I have a PhD in Neuroscience) I authored or co-authored more than 50 journal articles and reviews on my research.  My professional profile can be seen here on LINKEDIN.

Why I became a breathing educator

If you are reading this because you have CFS/ME, I know what you are going through. I know what it is like to hold onto a job by my fingernails, worried about how we would feed the family if I lost my job, come home and eat and sleep and spend my weekend recovering.

I had no social life. I was lucky to quickly get to a consultant who diagnosed me with candidiasis, and anti-fungals and a yeast and sugar-free diet helped a lot, but not enough.

I felt I had been “written off” and had nothing to offer. I was a mum, partner and employee with massively reduced physical and mental output compared with previously.
For me (after trying many different avenues, cranial osteopathy, chiropractic, mercury amalgam filling removal and more – I became a “fat-folder patient”).

How I got sick

I suspected my symptoms were “stress related” but they did not ease when I left my stressful job and moved out of London to the countryside.

Looking back on my history I can clearly see my own physical and emotional stresses accumulating, from a very traumatic bereavement, on-going work and family stresses, then a really bad summer respiratory infection and cough that was not shifted by two different antibiotics (but they probably contributed to unbalancing my gut flora, hence the fungal overgrowth/candidiasis).

A cough seems to be one of the best ways to mess up your breathing pattern, and many of my clients tell me “I was fine until I had that cough/chest infection, and I never really got my health back!!”

The breathing centre in the brain gets to think that big volume breathing is normal and unless you know about it, it is sometimes hard to recover. Luckily you CAN retrain your breathing by doing a series of gentle exercises and making some life style changes, and you CAN have hope of better health.

My recovery

Changing my breathing back to a more normal pattern really helped me. It was a big missing piece of my health puzzle, and one I had frankly never considered. One definition of stress is “anything that makes you breathe more”. And I know now that breathing too much can actually deplete the body of oxygen. And stress can be emotional or physical.

So that is why I do what I do and why I am passionate about it; I found a way to improve my chronic fatigue by better breathing and I trained as a breathing educator so I could help others with this devastating disease. There is so little help out there for them (you?).

Then chronic backache made good breathing impossible, and I discovered postural alignment therapy (Egoscue) to help with that. And I am still amazed at the progress I am making -it’s wonderful to have decreased pain and increased function when I had accepted decline at my age was inevitable. It’s not!


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